Maleah Nicole Berg
Donation protected
Maleah , Alrien, Wendy, and A.J. need your prayer and support:
Maleah is 17 years old and has been diagnosed with a rare genetic disorder called Hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is a connective tissue disorder that affects nearly every system in the body including her skin, joints and organs. Her joints often dislocate or sublex (a subluxation is not quite a dislocation but still very painful). This causes widespread musculoskeletal pain that is very difficult to manage. She also suffers from neurological symptoms like losing the function in her arms/legs, seizures, nausea, dizziness, and fainting. This disorder causes dysautonomia which causes problems for the regulation of her heart rate, blood pressure, temperature, and swallowing. Her heart races from small postural changes and the hEDS causes some mitral valve prolapse so that her heart is not operating as it should. Her skin is extremely sensitive. Just a small bug bite swells up to about 4 times the normal size. Dealing with all of these symptoms every single day is completely debilitating. Maleah was also diagnosed with Complex Regional Pain Syndrome (CRPS). CRPS is the most painful condition a person can experience and is ranked higher on the McGill Pain index than childbirth or amputation. Those with CRPS describe it like being burned alive, from the inside out. Due to these conditions, Maleah went from a Champion Irish Dancer to bedridden most days of the week (we appreciate the good days)! Perhaps the most difficult part of this disorder is that it is so rare that doctors know little about it and that means the best they can do is manage the symptoms and most of them don't even know enough about the disorder to do even that. We have to go to many different specialists for care including a cardiologist, gastroenterologist, neurologist, rhumatologist and geneticist. It is exahusting just to get her to all of her appointments.
Fortunately, we found the Spero clinic in Arkansas that deals specifically with this type of disorder. The Spero clinic is a holistic medical treatment center in Arkansas led by well-known Quantum Neurology Nerve Rehabilitation specialist, Dr. Katinka van der Merwe. Dr. Katinka has treated patients with hEDS and CRPS from all around the world with her effective 12 week Neurological Rehabilitation Program. In fact, they have an 84% success rate with patients. We have heard about the amazing miracles coming out of this clinic and we are so excited to get Maleah there.
The only downside is that my insurance does not cover her cutting-edge treatments. So we are humbly asking for assistance to get Maleah the help she needs to gain some quality of life. We would be so grateful for any gift, large or small. Thank you from the bottom of our hearts for partnering with us to help Maleah get back to life!
Maleah is 17 years old and has been diagnosed with a rare genetic disorder called Hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is a connective tissue disorder that affects nearly every system in the body including her skin, joints and organs. Her joints often dislocate or sublex (a subluxation is not quite a dislocation but still very painful). This causes widespread musculoskeletal pain that is very difficult to manage. She also suffers from neurological symptoms like losing the function in her arms/legs, seizures, nausea, dizziness, and fainting. This disorder causes dysautonomia which causes problems for the regulation of her heart rate, blood pressure, temperature, and swallowing. Her heart races from small postural changes and the hEDS causes some mitral valve prolapse so that her heart is not operating as it should. Her skin is extremely sensitive. Just a small bug bite swells up to about 4 times the normal size. Dealing with all of these symptoms every single day is completely debilitating. Maleah was also diagnosed with Complex Regional Pain Syndrome (CRPS). CRPS is the most painful condition a person can experience and is ranked higher on the McGill Pain index than childbirth or amputation. Those with CRPS describe it like being burned alive, from the inside out. Due to these conditions, Maleah went from a Champion Irish Dancer to bedridden most days of the week (we appreciate the good days)! Perhaps the most difficult part of this disorder is that it is so rare that doctors know little about it and that means the best they can do is manage the symptoms and most of them don't even know enough about the disorder to do even that. We have to go to many different specialists for care including a cardiologist, gastroenterologist, neurologist, rhumatologist and geneticist. It is exahusting just to get her to all of her appointments.
Fortunately, we found the Spero clinic in Arkansas that deals specifically with this type of disorder. The Spero clinic is a holistic medical treatment center in Arkansas led by well-known Quantum Neurology Nerve Rehabilitation specialist, Dr. Katinka van der Merwe. Dr. Katinka has treated patients with hEDS and CRPS from all around the world with her effective 12 week Neurological Rehabilitation Program. In fact, they have an 84% success rate with patients. We have heard about the amazing miracles coming out of this clinic and we are so excited to get Maleah there.
The only downside is that my insurance does not cover her cutting-edge treatments. So we are humbly asking for assistance to get Maleah the help she needs to gain some quality of life. We would be so grateful for any gift, large or small. Thank you from the bottom of our hearts for partnering with us to help Maleah get back to life!
Organizer and beneficiary
John Gittisarn
Organizer
Simi Valley, CA
Wendy Berg
Beneficiary
